2005 June

Kids Computer Club

Future Guest Speakers

Our Aspergers Library

Funworld Play Session

Improving Services

Parents Meeting held on 18th May 2005 - Introduction

Commonly Associated Conditions

Sleep Problems

Diet

Fish Oils

Kids Computer Club

The kids loved it! Some were mostly interested in playing games (which is fine, of course), but it was a great chance for them to spend time with other kids swapping good sites, etc. Others are more interested in learning to write html and build their own web pages. Whatever works! If you'd like to book a place for your child(ren) please contact James (see contacts below) Back to top

Future Guest Speakers

In the last year we've heard from a great range of speakers, including: Educational Psychologists, Sheffield Hallam Autism Centre, Dietician, Thorne House, Paediatrician, Child Psychiatrist, Psychologists, and Connexions. Do you have any requests for future speakers? Please let any of the Steering Group know of your suggestions. Back to top

Our Aspergers Library

We've added some more books - too many to list here. But they'll be available at the next Parents Meeting to browse. Back to top

Funworld Play Session

The next session at Funworld is planned for Sat 25th June, 4:00 to 5:30pm. It's open to all the children of BAPG parents and their friends. The cost is only £2.50 per child. The normal height restrictions don't apply for this private event. Please note that parents remain responsible for the children they bring. Back to top

Improving Services

In different ways, we've probably all experienced the limitations of the local services to help our children and support us as carers (lack of resources usually being the key). Many of us will have ideas about what could be done to improve things. For instance, you may have be ideas of how to improve the delivery of the existing services, or perhaps you know of something available in other areas which you'd like to see in place here. Do you think BAPG could help? There are certain grants available that we could apply for to set up something (as other local AS groups have done), or perhaps by appropriate lobbying we can raise awareness our kids needs. Please let us know what you think. Back to top

Parents Meeting held on 18th May 2005 - Introduction

The speaker at this meting was Dr Ravi, a Consultant Paediatrician. She aimed to offer a paediatrician's perspective on Aspergers Syndrome. She does not have many clients with AS, as her role is usually confined to diagnostic work-up, rather than ongoing behavioural support. She recognised that parents have an expertise in their children?s condition, and the weaknesses in local provision for children with Autistic Spectrum Disorders (ASD). Dr Ravi suggested that parents should lobby for improvements, and that they might obtain a better response than the professionals can. Back to top

Commonly Associated Conditions

Epilepsy - also a neurological condition
Other brain dysfunctions eg Fragile X and Retts syndromes.
Dispraxia, tics, ADHD and Tourettes syndrome. Back to top

Sleep Problems

These are a common paediatric problem, and more common where there is a also neurological problem. It is difficult to generalise, as the issues which affect other children also impact on children with ASD. The first steps in treatment are to look at sleep hygiene - e.g. bedtime routines, family behaviours, environmental factors (noise, bedrooms etc) - and then to implement behavioural approaches.

Medication can be looked at when these methods aren't successful. Sedatives can have a short-term effect, but can be paradoxical in children with developmental disorders. Underlying issues causing sleep problems e.g. anxiety and depression can be treated with medication. Treatment with the hormone melatonin has been found, in small-scale studies, to help in normalising sleep patterns, and to help get a child off to sleep. It is less effective where the problem involves frequent waking. Melatonin has not been sufficiently well researched to permit it to be licensed, and due to lack of knowledge about long-term effects its use should be restricted to 6-9 months, with the child?s growth being monitored. It may not be appropriate for epileptics. Back to top

Diet

Dr Ravi often sees children whose diet causes problems. Children with ASD often have restricted diets, and management of this requires an individual approach - sometimes with the involvement of an educational psychologist or dietician. Sometimes supplements are necessary to maintain normal development, although a behavioural approach is key to a solution.

Some parents are interested in a gluten-free, casein free diet (gf/cf diet), and there has been some research suggesting a link between children with autism and dysfunction in the metabolising of gluten. However this evidence is not considered sufficient to enable NHS staff to prescribe a gluten-free (or diary-free), diet to children with ASD. Although dieticians can advise parents whose childrens diet is gluten-free because of coeliac disease, the national policy is that they are not permitted to give this advice where parents of children with ASD chose to remove gluten from the child's diet. Back to top

Fish Oils

Research is producing encouraging findings relating to the benefit of dietary fish oils in improving neural networks. Omega 3 has a role in maintaining cell membrane integrity and as a communication medium between cells. It may help improve behaviour and learning skills, and helps with the symptoms of AS and ADHD. Long-term safety is not yet established, although there is no evidence of harm. Some parents at the meeting knew of cases where GPs have prescribed fish oils.

Eye-Q is a commonly used brand, but Dr Ravi pointed out that it contains evening primrose oil which is not recommended for epileptics. Ruth Coppard suggested that any beneficial effect from fish oils should be apparent within 3-4 weeks. Back to top